← Return to Hailey-Hailey Disease

Discussion

Hailey-Hailey Disease

Skin Health | Last Active: Sep 3 7:58pm | Replies (169)

Comment receiving replies
@vthailey

I am 51 and was just diagnosed with Hailey Hailey Disease 3 weeks ago. No family history. I have sores mainly on my scalp which are extremely painful. I have been prescribed oral anti fungal medication, municiprone ointment, steroid lotion, and am currently on prednisone, doxycycline, steroid oil, steroid ointment and just started laser light therapy. I am wondering if anyone had found any diets that have helped to improve and prevent flare-ups. I am overweight and have seen recommendations for weight loss to prevent sores in skin folds. Weight loss would be good for me in general but would love advice on foods/types of diets or foods to eliminate that others have found useful.
I am a woman and have lost a fair amount of hair due to the plaques. Has anyone experienced this and has your hair grown back?
Thank you in advance!

Jump to this post


Replies to "I am 51 and was just diagnosed with Hailey Hailey Disease 3 weeks ago. No family..."

@vthailey
About diet, I've stopped eating gluten almost entirely and have had success. This is just my experience, but hopefully it helps.
I had HHD flare ups for a couple years. Flare ups happened a few times a year across my chest, neck and forearms, plus constantly under my armpits and on my torso. Not the scalp like you mentioned.
Dermatologist biopsied my armpit to diagnose the HHD.
A family member told me they had gone gluten free and it helped, so that's where I got the idea.
I stopped eating wheat completely and I've entirely cleared up. I haven't had to be as extreme as avoiding cross contamination. Then eventually I could eat a few bites of things containing wheat flour occasionally and been okay. I mean a bite or two every couple weeks. That's been a year and a half ago. There are so many options to go gluten free it's very doable once you make some adjustments and have some support.
There are a few other people on this group who say they do low carb diet, low sugar, reduced tomatoes, etc.
I asked my dermatologist about going gluten free and he said he didn't know that it was studied. But it's what has helped me.
About other things I do to manage it: I shower soon after exercise.
I use a body powder in my groin to keep it dry. Air out after showering. Manage stress, my first big flare up happened related to a very stressful situation, so trying to be aware of that. No idea if anyone else saw a connection to stress. I don't see that on this group.
If I overdo eating some gluten I get a small sores first under my armpits, so I use mupirocin to prevent it getting infected and then get really diligent again.
As I said, just my experience. Hopefully you find relief.